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Living with Polyneuropathy CIDP, GBS, & CMT

Manhattan doctors


#1

Suggestions needed for top cidp doctor in Manhattan.


#3

Russell chin at Cornell—kind and smart


#4

The CIDP/GBS International Society has different centers of excellence around the country. Please try that organization’s list of excellent centers.
https://www.gbs-cidp.org/


#5

HI Bill, Brad from So Cal here, I always appreciate your replies as it gives me hope, I am still dealing with pain and numbness but am able to do many things. I have not used a cane for a couple of months however I am still on 10mgs of prednisone daily and IVIG every three weeks, I notice that when I tried to go lower on the prednisone, I would get real bad. I was sent to a rheumatologist who put me on Cellcept and I noticed that for some reason, I got worse, she took me off that and put me on Plaquenil (spl) but have been dealing with some breathing difficulty and throat pain for the past month now. So now I’m not taking that until I see her again this Monday. I read often where there are good results combining the therapy of IVIG with an immune modulating type drug but have yet to get there. I am currently walking and going about my day but go down by 1 in the afternoon with extreme fatigue, numbness and pain. I will try another drug, perhaps Cellcept again as I really never got to a dose that is considered therapeutic. But, and the reason for posting here, I am finally gong to see a specialist at a center of excellence (UC Irvine Nero-muscular center) (at your suggestion) on the 14th, we’ll see. Anyway, thank you my friend!